Thursday, March 31, 2011

The balance

Tomorrow we have our IEP meeting, when (hopefully) we will sign the paperwork that puts Maya in the preschool that we really like, and then a big weight will lift off our shoulders. :)

A few months ago we had the preliminary IEP meeting, in which I clashed with the CPSE official. I said that I wanted a bunch of after school therapies approved, he said that we should just start school and then come back with the school team in the fall if we all think Maya would benefit from more therapy. I said that wasn't good enough (because really, with her evaluation results, she should totally qualify for additional services). He said too bad (basically). I ordered IEP books and planned a fight.

And then I changed my mind.

I asked questions of our therapists, and then spoke with other families whose children started preschool this past fall. I researched. I thought about school starting, schedules changing, no naps (the preschool doesn't have naptime), and realized that I only want Maya to have therapy maybe twice a week after school. Then, I decided that the afterschool therapy we need to keep is the private oral motor stuff, which targets both feeding and speech (the therapist is PROMPT certified, for those who know/care about speech stuff). She'll be getting OT, PT and speech at school, and I feel like her OT and PT needs are more typical than her oral motor issues. That's where we'll need an afterschool specialist.

I don't make decisions lightly. There was ruminating. There were eyes-filling-with-tears. There was anxiety.

Because if your child has special needs, you think a lot about needs. The need for PT to address balance, walking, climbing stairs, core muscles, etc. The need for OT to address fine motor skills, eventually holding a pencil, dressing and undressing, etc. The need for special instruction to address play skills, attending to activities, interactions, etc. The need for speech & feeding to address, well, speech & feeding. And it's very difficult to determine which things are most important, which ones to focus the most energy on . . . but you have to make those choices, because it's really hard to work on all of them, all the time.

But we made our decision, and we're ready to (hopefully) sign for the school! And we're excited! And hoping that it goes smoothly! (Send good thoughts, the meeting is at 9 tomorrow morning.)

And when I was telling someone (someone lovely, who only has Maya's best interests at heart---someone who meant totally no ill will at all) that we're going to sign for the school and not argue for afterschool services right now (although I'm keeping an open mind about meeting in Oct/Nov to add services in) this person said, "You're only going to take what the school offers?" And I said "Yep." And they said "I think you should do more."

(I think I clenched. Then it started to echo in my head.)

I think you should do more.

(and then my stomach dropped)

First off, Maya has a lot of people in her life. She has 5 therapists (and another 3 that we used and then parted ways with), 6 doctors (and another 3 that we used and don't currently need), and a bunch of family and friends, too. The decisions that Dave & I make on her behalf might not be everyone's ideal choices . . . but frankly, this isn't a democracy. When I was thinking through our options, I asked for opinions and advice from the members of our team . . . but I'm not polling the crowd for votes. We're the parents, it's our decision. This is our life.

I think you should do more.

Second, this is our life. Life.

Where does the balance fall between life and therapy? It's a tough question, isn't it? For the past 2 years, therapy has filled a large percentage of Maya's life (and I wouldn't change that if I had to redo it. She loves the therapists, they love her, and she's making great progress). We have 17 units of therapy each week . . . and when someone asks if we want to get together, I have to sheepishly explain that we're only free from 10:10-10:50 on day A, or from 12:15-1:15 on day B. Despite the fact that Maya is only 2 and I'm a stay at home mom, we are constantly busy. We are a revolving door of therapies and doctors appointments. Since Early Intervention is a birth to 3 program, it was easy to think "3 years of intensity----we'll do everything we possibly can!" (I even left work, remember?)

But now we're leaving EI and going into the school system. And I'm starting to wonder . . . how long is this race? It's certainly not a sprint anymore . . . is it a marathon? A half marathon? How many years will Maya need therapies for?

And in looking at a longer road, it's time to think more about the balance.

Because I certainly don't want to look back and wish that we did more.

I think you should do more.

I think we should do more, too.

More time for playdates in the neighborhood.
More time giggling at dogs in the dog park while Parker runs and we enjoy the sunshine.
More time walking at a leisurely pace (and less time glancing at my watch to see if we need to race back for therapy).
More time at the playground, or sitting on a blanket in the park.
More time for Maya to walk outside (instead of throwing her in the stroller because we don't have time).
More time to play at night before a super tired little new preschooler has to sleep.
More time for spontaneous trips---the zoo? the museum? the grocery store?
More time when it's just the 3 of us.
More time, more time, more time.

Not only am I thinking about Maya's therapy goals, I'm thinking about her life. And our lives. And I want to celebrate in September, and get her off the bus and play . . . not think "I'm sorry you're so tired honey but let's just hop in the car and run over to your PT/OT session."

She will (hopefully) be going to a wonderful school where she will be learning and developing from 8:30-2 every day, surrounded by adults who are highly trained in working with children with special needs.

So how about after she gets off the bus, 3 days a week she'll be therapy-free and just get to be a 3 year old girl?

How about we don't stretch her to the point that she's asleep or in tears by the time Daddy gets home?

How about no more frustrated tears for me when I can't figure out what to cancel in order to fit in an appointment, or a playdate, or a birthday party?

How about we stop racing, and try to hit a sustainable stride?

So here's to tomorrow, when we will hopefully have a simple, amicable, stress-free meeting, the papers will be signed, and our spot in the wonderful preschool will be secured.

And (hopefully) here's to next year, Maya's first year of school, where we will walk the tightrope of therapy life and real life, and make steady progress and lots of memories.

22 comments:

As a soon to be occupational therapist (just a few more months!), I think you are making a wonderful choice. Finding that balance between therapy and life is tough, it sounds like you have your thoughts in the right place! Keep Maya engaged in therapy, while still keeping your life as a family! Best of luck tomorrow!

Good luck with your meeting. We're coming up on that very quickly here, much faster than seemed possible when our kiddo was born in fall 2008.

I also posted recently about realizing that we needed to cut back on therapy. I felt guilty cutting back to "only" 2 days-multiple sessions each day-but it was the right decision for us. He needed more time to play, and I needed time to be a mommy.

Dana...I think that not having a ton of after school therapies at this point is a good call. Re evaluate after she is in school for a few months. Keeping PROMPT and the oral motor/feeding therapy is great. I worked with the 3year olds for quite some time and you do not want her to burn out. It is a long day for her. Good luck tomorrow.

I just wanted to say I appreciate your blog more than words can say. You have a way of writing everything that goes through my overloaded mind yet have trouble expressing in any meaningful way to others. My son is just two and like Maya he remains undiagnosed. Unlike you, my sons father walked out on us when he was ten months old and so I have been living in Holland alone and going to the gazillion appointments and therapies by myself. I am exhausted in every possible way but every day when I look at my son I get up and do it all over again because that's what we do. We get up. We breathe. We prepare ourselves for another day of being totally revolved around our special needs child because that is what they need. The systems are different here in Australia but the fight is exactly the same and the feelings and frustrations are definitely there too! So thank you so much for sharing your family life with us- it is your gift to so many mothers out there, including myself. Melissa and Sebastian xxx

Yay for you! We have gotten the look at times when I tell people that Avery basically gets the minimum amount of school offered therapy and that we arent doing any privately. But we are doing 15 hours a week of behavioral therapy (which is a little over 50% paid for but still hurts the bank account!) and there honestly isnt ANY more time for anything! barely enough time for all that lovely stuff you mentioned-that made me smile. There is something to be said for an easy IEP with no fighting. I hope it goes awesome tomorrow!

Totally amazingly said!!! Dana...I admire you and your strength so much! My daughter is getting ready to leave the security of her integrated preschool program for the scary world of kindergarten, and I am totally scared of how everything is going to go. If you have any advice for me (other than the amazing story you just shared), feel free to get in touch with me, I am always open......You are an amazing Mom! Maya is so lucky to have you! I will be thinking positive thoughts for you...and I hope that you will do the same for me...on May 9th!!

Love this post. I agree, the balance between life and therapy is such a tough one. There's always more, isn't there? I hate that my 2 yr old's days are filled with dr appts and therapies. Well said. :)

Brilliant, honest, and pitch-perfect. You did it. Hopefully we can all celebrate our successes this weekend by relaxing. (It's this activity I've been reading about recently, 'relaxing' I'll tell you more it later.) Crossing fingers and toes about tomorrow. Noah has personally offered to kick the arse of anyone who stands in Maya's way tomorrow. ;-)

I COULD NOT agree with you more! My boys are in therapy almost 6 hours a day, and I'm not going to deny that they need that, but it leaves us with almost no time to just be a family. Their needs are extreme, and the therapy actually includes teaching us ways to incorporate their needs into our daily lives and live more "normally", whatever that might be.....but I often wish we had more time to just go to the playground or go for a walk. I have taken them for a walk down the street with half an eye on my watch SO OFTEN, knowing we need to be back for therapy soon.

I understand where you are coming from. At some point, Maya needs to be a kid - not a patient. If you fill her days with school (where she's getting therapy) and then more therapy, when will she (and you) have the time to just have fun for the sake of having fun (strange concept isn't it?).

Last year, the preschool (special needs) offers us summer school with services. We turned it down. He had an opportunity to go to summer camp. They (the camp) gave us an advocate to help with his care there and he spent the summer swimming twice a day, playing basketball, doing arts and crafts, etc. He did speech 1x a week so he wouldn't lose ground. This year they wanted us to do summer school and again, we said no. Sometimes having fun is more important.

What a great post, as usual. :) This one really has me thinking. Sammie is in a special needs preschool four mornings a week- three of those days we go directly to private speech and OT then home for a nap. On Friday (her day off school) we do another private PT. Needless to say life is busy and I often wonder if we will ever have more time- time for a dance class or a playdate or a leisurely walk to the park. I recently stopped for a coffee at Starbucks and saw a a little girl and her mom enjoying a snack and it made me sad I didn't share that kind of time with Sammie. Maybe we are doing too much... I just don't know. With EI it was 8 a week so we cut it in half to 4- but I like what you said about a sprint vs. a marathon. I think it might be time to start training for a longer distance and enjoy the run.So glad you have found a school for Maya you are happy with. And good for you for making your own decisions for you, Maya and your family. :)

So well put. Balance is such a difficult thing to achieve and likening your journey to a marathon is exactly how we feel too, except, like you, we've been sprinting and so hard that sometimes you lose track of what's around you and you feel sick because you're running so hard with no break in sight.

I hope that your appointment went well!

You are doing an amazing job of navigating this race! Keep inspiring all of us!

I am a teacher with infants and toddlers in Maryland and I just found your blog after a former slp co worker told me about it. I love The way you write and I want to thank you for sharing your family with us. Seeing things from a different perspective is inspiring and makes me want to be a better teacher. Maya is going to love school;)

thank you for writing this. my 4 year old son has mild CP (not really an official diagnosis, just a label to give his developmental delays), and although he's been in various therapies since he was a year and a half, i am just now really coming to terms with his delays.

i've been reading a lot of blogs of special needs parents, and i've inevitably started comparing what i do with what they do, and started beating myself up about not giving him enough therapy, or not doing enough with him at home. your post is a reminder that Ian is not a case study, he is my child, and we all have lives to live. it's not a sin for me to have time to enjoy my child, delays and all.

Thanks for sharing this. I often wonder similar things and I am so grateful that you could express these feelings so eloquently. We recently moved and I am afraid that after settling into a routine with therapists and doctors that we will have to start all over again. Balancing is hard and it fills my thoughts frequently. Again, I thank you for sharing.

Hi Dana, Your blog is awesome!!! And this post in particular is very inspiring. As you wrote this a while ago, I was wondering how now, after Maya settled in in school etc. your "balance" turned out. Did you go back and add any services or are you still happy with the plan? What are your afternoons like? If you have time, I am sure, your thoughts on that would make an interesting new blog post. All the best!